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Author
Topic: Brother just started treatment (Read 13013 times)

Hello, from South Africa - for almost everyone else we're soccer world cup land at the moment... but I've been experiencing a big dose of reality since June 15, when my brother called to tell me he'd just found out he is positive and that he has pcp pneumonia. thank you everyone for posting and particularly whoever started this website, i am not sure i would be able to string a sentence together here if i couldn't get the info and the support that comes through in the posts even if they are not specifically directed anywhere!

So... his cd 4 is/was 12 and his VL 2.5 million and when i got here (i live in another city) i had to take him to hospital - one night and he was getting worse. the hospital stay helped him to a point, but then he got Stevens Johnson Syndrome from the bactrim. I am really glad we are through that - it was not pretty...

he's on Wellvone now for the pcp and that seems to be clearing up nicely... because of his state of health and then the SJS he only started arvs on Wednesday. i have been feeding him the info and posts i read here... but we are on day 6 of the arvs (Stocrin -Sustiva- and Truvada) and the side effects so far seem to be that he is a little despondant, he's sleeping a lot in the day - but restless at night. I am quite happy that he is sleeping at all - because i don't think he slept at all on the bactrim - even with the sleeping tabs!!! he has been itching marginally, and then last night he started to get a rash on his thighs. the rash is still there this morning and he lost his appetite too. no nausea yet. and he hasn't had any hectic dreams.

so if you have any info you could share with me or just a message for him to hang in there, that he isn't the first or last that will feel this way and get better - i'd appreciate it... and he may even crack a smile.

we are having a good night so far... he ate at 6pm, and he is drinking water with a little isotonic cooldrink in it. was a bit uncomfortable but i gave him a bit of a rub and 'finding nemo' is on tv - so we both laughing... arvs at 9pm (it's 8.15pm here now)

Hi sisterr -It's great that your brother has your support. He is in the right place and sounds like he is getting great care. Finding Nemo will definitely go along way towards improving one's mood I liked the seagulls (I guess that is what they are) continuallly saying "Mine" "Mine"

Welcome to you and your brother --- I look forward to hearing updates and you all being a part of the Forum Family for a long time to come.

thank you phil - look forward to being part of the forum family for a long time too - and looking forward to my brother reading all the posts for himself and setting up his own profile... and hopefully learning lots and being able to support other people here too.

He didn't sleep - actually he did sleep - but he thinks he didn'tHe doesn't want to eat - but i got an apple in,and now i am going to try something elseThen the morning meds (Wellvone and Pullmison/Prednisone and Cytotec, Liver vitamin, Multivitamin)Rash is there on tops of legs and arms - but not hectic... also coming up on his back... but not hectic.

Anyone know at what point his despondency is a side effect of the treatment? When is the depression clinical?

having a bad night - it's 6pm (he'll take the stocrin and truvada again at 9pm)... dizziness and nausea and discomfort - he can't really articulate how he is feeling - but he certainly isn't feeling well...

it seems to be coming in waves - which is a change...then he says he is feeling much better... for 10 minutesthen he starts writhing again... for 10 minutes

so... he is feeling better now - and it's been for 15 minutes... seems he is having anxiety attacks more than anything else. and effects from getting strange sleep. will call the doc in the morning... and hopefully the night will not have too many bumps.

I personally have not been sick from PCP or SJS, other members here have and maybe they can chime in with their experience. But I would imagine that what he is going through is perfectly normal during this period that his body is beginning to heal.

The good news is that antiretrovirals work very well, especially the ones we have at our disposal now. I assume they did a resistance test to make sure that he has no resistance to Sustiva or Truvada? This would be the only thing I can think of that could be a complication. Assuming his virus has no resistance to the HIV meds he is taking, his viral load will continue to disappear until he is undetectable.

Make sure once he is better that he understands how important it is to continue with the HIV meds and not to skip doses. This is the only way to keep one's health up.

Your brother's case should serve as a lesson to many others; by getting tested and knowing one's status and with access to health care and HIV meds becoming as sick as he has can be totally avoided.

Fortunately his doctor is an hiv... not sure if specialist is the right word, or if he'd say he is a specialist (it's not on his card, but that may be because even in this country where we have an estimated 5 million children under the age of 16 looking after poz parents, people would probably not keep the card because of those 3 letters - hiv!). Needless to say, this doctor has only been his doctor since June 15... and i am not sure if he did a resistance test, but i have assumed this. i will check this morning - have smsed the doc and he will call me. Reading the posts in these forums - have established we need to understand his labs - and will ask the doc for them and talk to him about them and get my head around the info. For example i don't know what his percentage was/is...

He seems to understand about the meds and not skipping doses. We both know people who are on antiretrovirals, so it is frustrating that we got to this point of the story, before he tested. i know a few other people who have tested, and have not started treatment, and i have already engaged with them to build up their knowledge - like surfing this site and others, finding a doctor that deals with hiv and to really really really exercise all the options we now have to treat this. And to start NOW.

That said...

He managed to sleep last night - not for long. About 4 hours. And then in and out of sleep. My version would be that he slept more than that - although it was interrupted. The side effects do seem to put him into a sort of head funk at night with anxiety, which doesn't look like an experience i'd like to be having. It's like he is having a bad trip. He accomplished sleep by taking the sleeping tablet and the pain pill at the same time, so i have now removed those till i have spoken to the doc to see what he can take! Perhaps he will get an anti anxiety prescription.

To keep me on my toes... he shot out of bed this morning and came to sit on the couch in the lounge for breakfast - which is a first since he got out of hospital!!!!!!! (2 weeks ago) He never had an appetite really - but i got him to eat 2 apples and 2 hard boiled eggs and drink tea and ensure. His multivitamins and the Wellvone. I have been trying to get him out of bed - but he hasn't been interested. And then this morning there he was - suddenly on the couch. So i had to blanket him, because it is winter and his thermostat isn't really working anymore and it is cold here at the moment. He's gone back to bed and is napping. He looks way better than he did last night.

It's interesting for me that he gets most anxious at about 6pm - 3 hours before he takes the Stocrin and Truvada. And then the anxiety escalates - he says because he knows he won't sleep. And i am sure also because he has a lot on his mind besides sleep!

Being pattern seeking... since returning from the hospital and the PCP and Steven's Johnson Syndrome subsiding, he has been steadily improving - though it is baby steps. And it does seem after every really bad day (and i have already started differentiating between good and bad days, which feels like there has been progress out of bad day bad day bad day - or maybe my frame of reference is just more inclusive now!), and what i mean by really bad day is that a really bad day is worse than the day before, which may technically have been a good day - so it isn't really that bad a day (sigh)... after a really bad day, he seems to have a really good day. Which is what's happening today again. Like it's the best good day he has had so far, so each good day gets gooder and gooder! This only 8 days into treatment.

It sounds like he's becoming anxious before taking the meds because he's probably afraid of possible side-effects, and who can blame him after having SJS. SJS is nasty business. The dreams and sleep-disturbances that can accompany the Stocrin are no bed of roses either.

Well, maybe in a way Stocrin IS a bed of roses - you have the beautiful perfume of what it does to the virus, but you also have the thorns of side-effects.

The sleep disturbances he's been experiencing may well go in time, and it sounds like it's already starting to abate. He should stick with it for a little while longer, but if it doesn't continue to improve, he should find out what else is available. There are other combos he can take, but I don't know what's available in SA.

I'm not sure why you've taken the sleeping tablet and pain-killer from him - if they're helping him get some sleep during this initial adjustment phase, why not take them? If he's only taking one of each and/or not exceeding the prescribed dosage, it's unlikely to do him any harm. He really needs good rest right now.

I'm so glad he's got someone who loves him taking care of him. He must really treasure you. And I'm glad to hear he seems to be having the first good day in a while.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Took the pills away motivated by fear (of SJS, of toxic overload stories and how other medication interacts with the arvs... knee-jerking all the way...), but got hold of the doc today and have anti-anxiety meds and different sleeping tablets.

PLUS -

The good day continues... he asked for KFC for lunch!!!!!!!!!!!! And he has been moving around, AND we had a strange giggly moment just now, which he initiated about the trees blowing outside. i am definitely on the 'stick with it for a little while longer' page. And he has a good doctor, so should he need to change meds - there is a certain level of trust, which helps. He is stronger than he was this time last week... so am hoping that as his sleep gets better, he'll become stronger and stronger

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

It's so nice to hear about his progress, you're taking such good care of him.

His CD4 percentage is likely to be very low at this point but it would be good to know the number since this is a good barometer of immune health and you will have something to compare as a baseline as it begins to improve. Sometimes if it's taking a little longer for CD4s to improve, the percentage can give a fuller picture of what's going on.

Once a person's CD4s get to such low levels it usually takes a longer time to see a full recovery but there are so many variables involved, including an individual's genetic makeup, that it's hard to predict. I know someone who was down to about 3 CD4s and has recovered to over 500 now, others are not so lucky. Anything above 200 would be good.

I always get photocopies of my lab reports when I go in for my visits but maybe not all doctors are as amenable as mine.

And here we are on day 10! the rash he had on his arms and legs has gone... and nothing on his chest or back... at the moment. he is on anti-anxiety medication and what may have been panic attacks have subsided these past two days. he is also moving around more and talking about working through some emails from work.

where he normally went into fugue at 6pm every night (he takes arvs at 9pm), last night there was only a slight hiccup at about 10.30pm. new sleeping tablet gets him 4 hours of sleep before he wakes - and still not able to sleep again.

he's eating

and side effects currently seem to be getting a bit spacey now and then and that hung over look in the morning.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Onwards and upwards definitely - am already feeling sheepish about how ignorant i was about how far the meds have come, and how treatment has progressed... can't wait to wonder about what all the fuss was about. he actually said to me earlier 'i wonder why i went off like that the other night.'

pleasant evening, it's been a good day - he got a bit fuzzy mentally in the middle of it - but other than that he is up and drinking fruit juice straight out of the bottle at the fridge for the first time in about 25 days!

QUESTION: he's getting heartburn - is there any reason he can't use an antacid, like eno sparkling antacid... can't find anything saying he can't on the insert for the arvs... but i seem to remember the doc saying something about antacids - or it might have been about the cytotec that he took after the SJS to help his stomach... there was so much info that day - and i couldn't write quick enough.

we had a protracted battle this morning. he is of course feeling so much better that he wanted to go out for breakfast. i wanted to keep him in the house at least until i could get him a giant oxygenated ball to go out in public in (until his cd4's are over 200 at least, i told him and myself). but then i folded and said okay. so we went out for breakfast and i have to admit i was just slightly offended! i have been offering him eggs for breakfast but he kept asking for pronutro - and there we were in the restaurant, with him having eggs and bacon with toast and coffee. needless to say i thought he was gonna throw up, but he didn't. so i paid and we came home. he wanted to go to the mall and get a book - which we had another protracted battle about... i don't really do malls, certainly not with the madding crowd. and the crowd is really enormous at the moment with lots of soccer fans fighting over the last still mineral water and Levis in the city. so we came home and he is sleeping the activity off now.

i don't know if i should have cloistered him for longer, but getting back in the saddle is probably his next step, and far be it for me to stop him from getting well again!

this morning he just had that hung over look and mood going... and sometimes he fudges his words. thought he might get anxious going out, he didn't... anxiety seems gone. don't think i would have encouraged him to continue with treatment, or continue encouraging him if i never found this forum, or had his docs support. thank you everyone.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

He's out of bed and moving around this morning - and his appetite is back. He slept through the night, 8 hours at least! YYYYYYYAAAAAAAAAYYYYYYYYY!!! We went out yesterday and Saturday, and he's itching to go somewhere today - so things are looking up. The side effects seem to be subsiding... and those few hectic days, seem well worth it now, looking at him. He's been surfing the site himself this morning, so i am going to thank everyone for the support this far - and hop on over to 'Someone i care about has HIV' in future.

I hope with your help and medication, he would be okay. I think may be the same thing happen to me too. But thanks to my wife and the availability of medicine I can fully recover and back to my regular life. The medicine are also working fine to me. I have no side effects nor any anxiety issue. CD of 12 and the vl of 2.5 million were very much frustrating numbers.

:)And just as suddenly he has reached day 22... looking back the first few days just watching the side effects was unpleasant - there were three days of no sleep, muscle pain, headaches, extreme anxiety, the rash - but not hectic (more the possibility of SJS trying to surprise him, but it didn't happen again), the squirts (eeewwww), nausea, and basically a really really bad trip, which i don't think he could articulate in words - or understand.

we ended up back at the doc last week - post nasal drip and thrush came back, plus he started coughing... so got diflucan for the thrush, and after 3 days and just a pill a day the thrush left him Sunday (he last had thrush for 15 days with the diflucan, just out of hospital and before starting sustiva and truvada-two days into treatment, and still on the diflucan the thrush cleared)... antibiotic for the chest - the doc said there was something trying to start up there - and finishes antibiotic tomorrow, cough gone and post nasal almost negligible now.

he still feels incredibly weak - any activity has to be short and sporadic - which is frustrating him. think he thought he would bounce back much quicker - but from where i am sitting he is looking so much better. and his energy is up, but his strength still down... also being more active, i think he sleeps better... although the anxiety meds are also helping, i am sure. he's sleepin right now without a sleeping tablet, taking the anti anxiety this morning and this evening. his skin looks unbelievable. this morning i came up with all sorts of excuses to fuss around next to him, to make sure, before i commented. his skin looks brand new! its been looking much better - but today, it's brand new!!!

he spoke to the doc about the anxiety issue and not sleeping - he definitely felt those side effects - and the doc explained because he is on tb meds, sustiva and truvada are the best option, but once he is off the tb meds they could definitely look at trying another combo if he wasn't happy. and that if it was totally unbearable they could discuss it again in a week. just talking about it and understanding he had options seemed to lift 50% of his stress... also the doc's reaction to the return of the thrush and his cough reassured him - no it's not good that you're getting sick... but it doesn't mean we can't do something about it. he's frustrated by having to take the tb meds, as he didn't test positive for tb... but tb goes hand in hand with hiv here, there are even more people infected with tb... and we have all sorts of mean drug resistant strains... and his low cd4 count and high viral load... could mean it is hiding, plus... he will be exposed to it when he goes out anywhere, it's that prevalent. the tb meds are quite something on their own, but he's got a month left of this lot and then he goes onto the 'lighter' ones.

This is all very good news. Your brother is improving and the CD4 gain may take a while, but just because it's low doesn't mean he can't be healthy while it's improving. I'm so glad to hear that he's doing better and I sure hope he appreciates you taking such a keen interest in his health. Some of us don't have anyone who cares at all much less on the level that you seem to be keeping up with him.

He is improving, and i am trying not to obsess about the numbers, but i am wondering what they look like already - and what they will look like when he does his next lab tests... that test which does his percentages and the cd4 and cd8 and viral load and and and is really expensive here, so will do it after... not sure if the doc said 6 or 8 weeks. but it's written down somewhere.

He definitely appreciates me - although i am going through a learning curve, that ultimately it is his body and that he will continue improving on his terms and not (necessarily totally) on mine... My way (and sometimes i can be Stalin) is far more calorie and easily-accessible-protein dependent, with lots of steamed vegetables and hours of thought-provoking macrobiotic sums and at least one of those protein shakes daily, and probably no refined sugar or even sugar at all - whereas his way leans more to the choc banana double thick and ribs.

And just as suddenly one month into Stocrin(Sustiva)/Truvada treatment...

Sustiva side effects subsided - still getting a little dizzy and feeling a bit wobbly, but he has been in bed for 6 weeks!!!

He's been into the office and is managing 2 hours a day there and then working at home. He is fortunate to have a truly supportive work environment. He told some people, didn't tell others... and his boss and his colleagues have been really incredible. The added activity and extra mental work also seems to dampen the side effects of the Sustiva - or it's just the side effects tapering off over time - because he isn't as mentally foggy as he was. Or it's because his viral load has been hammered by the meds... Or... Or... Or... Whichever way i look at it - he is doing way way better, and looks it too!

GOOD LUCK TO EVERYONE WHO DOES DO THE SKY JUMP AND ANYONE WHO WATCHES THEM DO IT - LOVE ALL OF YOU HOOLIGANS.

Thanks Inchling. New number day is 16 August. It's circled on the calendar.

Thanks metekrop. He'll get here... but I gotta let him get here on his own - He doesn't really take instruction well and I have exhausted him these past few weeks demanding he drinks more water, puts socks on and eats more protein... He already trawls the site guest-like, without posting.

My brother is still improving by the day. On Thursday he started getting a rash on his back... which he only showed me yesterday... He wants to wait till Tuesday before we contact the doctor (Monday is a public holiday here - Women's Day).

It looks a bit like shingles - but it's not as virulent as the pics I looked at online, nor is it doing the band around the waist thing, and his stomach is clear. Just really tiny pimples with white heads at this point, and yesterday they were bigger and redder. He doesn't have any other symptoms... Might be some sort of Stocrin and Truvada (Atripla) thing... or perhaps some other IRIS sort of thing? He is into week 5 of treatment, and in retrospect reading about IRIS, perhaps what seemed like side effects of HAART has really been IRIS.

He's been up and about today, and eating like a combine harvester, so we'll wait till Tuesday...

My brother saw the doctor today - twas not shingles... twas Staphylococcal folliculitis... So he is on Klarithran - Clacee for that for 5 days and Merticortone (or something that sounds like that - which is a cortisone tab). The doc said something about his surface immune system reconstituting and finishing off what it couldn't before - a bit too enthusiastically.

He also has an eye thing... which he has eye drops for... His doc said it isn't anything serious or a precursor to anything worse - it's a kind of pink eye/conjunctivitis. He did name it, but there is a lot going on everywhere in my life at the moment, so I didn't retain much...

On Friday, they (his doc and my bro) decided not to check viral load and CD4, but just kidney and liver function... and lymphocytes... these all came back looking fabulous - today. Think his doc decided not to check CD4 and viral load because my brother was stressing out about his rash and he doesn't like needles - so he was a heaving bag of anxiety. He held back showing his doc the rash till today.

It was his process and I think in future he will consult his doctor earlier rather than later.

His next blood test will be kidney and liver function again in October and then in November they'll do HIV immune monitoring.

Other than the rash and his eyes he looks good. He's put 6kg on in the past month!!! His energy is up and he's much stronger. He's eating lots, he's had a headache free week for the first time in 10 years...

Forgot to mention that he's also finished the two month phase of Rifafour (Rifampicin, Isoniazid, Pyrazinamide, Ethambutol) YYYYYYAAAAAAYYYYYYYY! And started Rifinah (Rifampicin, Isoniazid) which he has to continue four months.

Your brother's experience sounds almost identical to mine. I had a severe rash going once I started meds (Doxycycline and time cleared it up). I also was having eye infections, but it would basically be the pores that my eyelashes stemmed from would have some sort of infection in them. This has all passed now (it's been a year since I started meds and I stopped having the issues about 3-4 months ago maybe longer). Time will heal him.